Really need some support/advice from people about what to do. I got diagnosed with an underactive thyroid last December which I feel hadn't been picked up for ages due to my TSH being low end of normal (1.2) with free T3 of 2.1 (3-7) and free T4 of 10.4 (12-20). Started on 50mcg daily and after 4 weeks felt like my life had turned around. Went up to 75mcg with Doctor's approval and continued to feel better.
Since then, I basically upped my medication progressively by myself because I wanted to feel better and better and wanted to lose weight. Over the next few months I upped to around 200mcg a day. Without any professional input.
Over this time I have had blood tests. My bloods on 50/75/200 mcg are all the same. I.e low TSH of like 0.03 and free T3 of anywhere between 5-6 (ref range 3-7). So my T3 levels are not increasing at all in response to my self-medicated increase dose. My bloodwork is still exactly the same.
But, at the moment I feel angry, irritable, frustrated and exhausted. I'm not particularly experiencing other symptoms of overmedication ie I'm not losing weight (but then I would say I am eating more). I don't have very fluid or regular bowel movements and I don't have the shakes. I just feel uncontrollably angry and I keep lashing out.
I know perhaps my approach to medication is at best an attempt to control my symptoms and feel as good as I can and at worse an outright abuse of thyroxine. I have also moved around quite a lot and am now with different GP's (I've seen 3 different ones since I moved) and they don't have any info from my last GP surgery so they kind of know that to some extent I upped medication myself but they do not know the extent. That, combined with my free T3 led the last person I saw simply suggest to reduce my Thyroxine to 175mcg.
I am confused about a few things. I am still confused about why my TSH never came up originally in response to such low free Thyroid hormones. I am confused about why, despite taking basically 2-3 times my prescribed dose, I experience no rise in free Thyroid hormones. And why I feel some mental manifestations of overmedication but no clear physical ones.? Has anyone else had experience of any of these things?
I took this all to another GP last week (on Thursday), and also brang up that a year ago I had an adrenal stress profile done and my cortisol was basically double what it should be. This had never been followed up (I got the test done privately and basically got turned away form a GP when I asked for a referral to an endo because of it). This GP took it more seriously however, referred me to endocrinology and I got a call on the Friday (the next day) from the hospital saying they wanted to see me first thing tomorrow due to the cortisol results (I think they are going to do an ACTH stimulation test)
Basically, I'm confused, I don't know how much of what's going in is physical or mental. And I am really confused about what my Thyroxine situation is and how best to remedy it. Do I begin to lower my medication dramatically? Is it because I'm taking far too much that I'm feeling so terrible? I have to say I felt the best on this journey when I was still taking around 50mcg to 75mcg. It was impatience and ridiculousness on my part that took me on the path of medicating myself, for no real reason other than chasing feeling amazing.
Any advice on any of this would be so helpful.
Thanks everyone
Written by
mk366
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Please don't reduce dramatically, you need to do it gradually otherwise it can be a shock to your system. I'd suggest decreasing by 25mcg every 2/3 weeks.
Your FT3 has improved considerably from 2.1 to between 5-6 which is considered to be 'ideal' being near or in the top 75% of range. Taking higher levels of Levothyroxine is likely converting to inactive reverse T3 (rT3) rather than the active T3 to protect your body from excessive and toxic T3 levels. High levels of rT3 can make you feel very unwell and I'm surprised you aren't experiencing considerable physical symptoms in addition to the mental ones.
Your original low TSH with low FT4 and FT3 sound like you may have had/have some pituitary dysfunction. The thyroid gland is healthy but not receiving necessary stimulus from the pituitary gland to produce thyroid hormone. TSH, in cases of pituitary dysfunction (hypopituitarism), is a useless test as it will always measure low and isn't indicative of circulating thyroid levels so FT4 and FT3 must always be tested.
Your high cortisol may be one reason why you don't feel 'amazing'. When you have the results of your tests post them with the ref ranges and some of the members who are knowledgeable about Cortisol will advise.
You should also ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
MK, you haven't put your FT4 results. Are they high? I was irritable, angry - aggressive even - when I was Under-treated. So those symptoms don't necessarily mean over-dosing. And your FT3 isn't over-range.
Being either Under- or over-dosed can have an effect on your brain. So what you are experiencing is more than likely thyroid related. Don't go thinking you're going mad! lol Also don't beat yourself up about upping your dose like that. 200 isn't that high a dose based on the way people were treated before the blood tests came in. They upped the dose until they felt better and never worried about whether they were over or Under some arbitary range. This is something people forget!
So, let's have a look at your FT4s and get a better idea of what's going on.
Hello! Rang up to get my t4 and t3 result again and my t3 is 5.6 and my t4 is 19.2. No other physical signs of over medication. No weight loss no shaking no increased movements. My heart rate has come up from 57 bpm to 75. My blood pressure has come up from low to almost a perfect score. Maybe my body just feel as though these free hormone levels are too high- before I got diagnosed I was 2.1 and 10.4 t3 and t4 respectively so these have basically doubled.
Ok, so your T4 is slightly higher in its range than the T3 in its. So, there might be a little bit of rT3 there.
So, what you've got to do now, is get as many of these things tested as possible :
iron
ferretin
B12
Folate
vit D
These are a absolute must.
magnesium
selenium
zinc
There shouldn't be too much trouble about getting those, I think.
Cortisol again - if you can't get a 24 hour saliva test, at least an 8 am blood test. But the saliva is best. Because high cortisol is usually followed by low cortisol as the adrenals struggle to do their job. An ACTH test will only tell you if you have Addisson's or Cushing's disease. It will not pin-point adrenal fatigue - no shades of Grey! lol Besides, doctors, generally don't believe in shades of grey, it's either black or white!
All of those things are essential for your conversion.
You should already be taking vit C in pretty high doses. Make sure you get a decent amount of fat in your diet, and salt. And no low calorie diets! That is most important. You need those calories to convert.
I don't think you're over-dosed by the look of things. Your symptoms would seem to be hypo rather than hyper. But that little bit of rT3 might be giving you trouble. If it were at all possible, I would say get some T3 and lower your T4 a little. If you can get your doctor to agree. He might not as you FT3 is in a reasonable place. But you've said that your FT3 hasn't gone up, so it might just go down as the rT3 goes up!
I can relate to a lot of what you say. I was diagnosed as having an overactive thyroid just a few weeks ago, I had been going to the Dr telling them my symptoms and I felt dismissed They attributed everything to my COPD and muscular problems. I was getting very angry, and worried, I too lashed out, thankfully only verbally. My memory was dreadful I thought I was becoming senile, I was put on Carbimazole 20mg daily . referred to an endo and re-referred to my respiratory consultant, She was the first person to take me seriously about the lashing out and memory loss, She did stress about being careful with the medication no sudden increases or decreases. My Gp halved my medication after only 3 weeks and within 3 days I was back where I had been to begin with. I contacted the emergency DR who saw me at once and upped the dose but she also stressed not to over medicate as this would affect the pituitary and push me to being in an underactive state. I am confused about how you can increase your medication and your GP not pick up, my GP will not issue a script unless one is due. My resp consultant has told me that the irritability, brain fog, and weight gain or loss can be symptoms of over or under active thyroid, so if you have inadvertently medicated yourself from under to overactive that could be why you still feel like lashing out. sorry to ramble hope this helps
This all helps massively! I went to see an endocrinologist this morning and had tons of blood taken for all of my hormones and an acth stimulation test done to check the to check the functioning of my pituitary. I made a point to talk about my recent symptoms and my headaches etc so hopefully a specialist will be more use than GP.
I have high cortisol (but not nearly as high as yours by the sound of it), and I have problems with irritability, unfocussed and random anger that I can't find a reason for, extreme tiredness, and I find it very, very hard to relax, so getting to sleep is very difficult. I'm not currently taking any thyroid treatment at all.
If the testing you have doesn't find a cause for your high cortisol and you are left to your own devices again, there are things you can do to help yourself.
You may find this link useful - it is mainly directed at dealing with insomnia, but has useful info on high cortisol as well :
If it turns out you need surgery for an adrenal or pituitary tumour (two known causes of high cortisol), do yourself a favour and research, research, research before anyone touches you with a scalpel. If you go on to the NHS Choices and the patient.co.uk websites and look up Cushing's, you can find on the forums and in the letters section that the treatment is as bad as thyroid i.e. insufficient testing, refusing to test everything necessary, telling you your results are in range so you are fine and there must be "something else" wrong with you. Don't let yourself be bullied and get referred to a hospital with a good surgeon.
I hope the endocrinologists you are seeing about your cortisol take you seriously and test you thoroughly. I'm not surprised you feel so awful with results like those.
Yes, that figures. The adrenals' busiest time is first thing in the morning. They have to get you up and dressed and ready for the day. If they are struggling, they will have a problem in the morning, and only pick up speed after the rush hour, so to speak. But they have pushed themself so hard, to compensate for the difficulty they're having that they over-do it and your cortisol is high most of the rest of the day. Gradually, as they get worse, the levels of cortisol will all get low throughout the day.
But yours isn't too low in the morning yet, so perhaps you've caught it early. Ashwagandha can bring your high levels down. You could try taking some around lunchtime.
So, you can help your adrenals by eating a high protein meal as soon as you get up. But preferably no sugar. Eggs or cheese or something. Get as much rest as you can, because this will rest your adrenals. And give them salt and vit C. They like that. lol
I know this is a few years old but I, too, have had this issue where my levels stay the same mostly regardless of my dosage and to where I feel it affects me mentally more than physically. I would be so keen to know of any updates if you see this!
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frustrated
Frustrated! 
frustrated
More tired and lethargic on T3
